I was diagnosed as having CFS - and all my symptoms perfectly match all the symptoms in the symptoms surveys here - including PEM
but after 5-6 years of misdiagnosis - i found that my illness was actually driven by a chronic bacterial infection with bartonella ( see my other posts for more on that).
anyway - despite having pretty severe PEM that could render me bedbound - i was able to carefully start exercising and by applying the principles outlined below - gradually increase what i could do over time
i wrote a guide for how i did this for another group i am in - but will post it below in case it helps others here as i am sure some significant portion of CFS sufferers are, like me, actually suffering from an undiagnosed bacterial infection - and the same is likely to apply to them - and possibly others .
i am still in treatment - but i am now able to work out with weights for over 1hrs per day and continue to move forward
it has definitely improved both what i can quantitatively get done in a day - and also qualitatively improved my quality of life
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obviously exercising with Lyme and similar infections is not a straightforward proposition
many will feel they cannot possibly exercise at all - and overdoing it is all too easy, and can actually set you back with more fatigue and adverse symptoms.
i didn’t think exercise beyond maybe walking was a possibility for me despite exercising most of my life - due to feeling so ill with Lyme.
however, i have been surprised to find that even when feeling pretty weak and awful - i can not only start to exercise (if done carefully) but actually gain strength and physical capability - despite how uncomfortable exercise feels now - vs before i got Lyme.
not only does this give me all the benefits that exercise normally gives people:
better mood, sleep, overall health, self-esteem etc
but it has actually increased what i can get done in a day - vs before i started
in other words, it has helped me move my recovery forward in measurable ways
so, i thought i would post a few words i put together on how to exercise with lyme (as someone who experienced chronic fatigue, PEM etc)
much of it is in line with Dr Burrascano's guideline
but adds a bit more specific guidance.
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Dr Burrascano talks about this in his 2008 guidelines for Lyme treatment - see the sticky post at the top of the forum page - i think it’s in there somewhere - it’s well worth a read
basically, we each have an ideal window to exercise in - whether sick or elite athletes
the bottom of the window is defined by the minimum amount we need to do to send a signal to our system to repair itself stronger in preparation for the next challenge
the upper end of the window is defined by the level beyond which we do more harm than good
the issue is that with lyme (or any fatiguing illness), especially in the beginning the lower end of the window is very close to the top end of the window- and such there is a very narrow margin between doing enough and doing too much.
also aerobic activities (activities like jogging or HIT) seem to trigger much worse responses than anaerobic ones like resistance training. Dr Burrascano highlights this also - and it has been my experience too.
he also says it’s the strength exercises that are the most important for the immune system and essential to get better from lyme - so it’s good that you are looking into it.
as an example, at this stage, I can walk 3-4 miles at a fast clip and be fine the next day - but if i try to run for even 100yards i will have ill feelings and extra fatigue the next day. yet I can do resistance exercises - like press-ups and dumbbells as long as i am careful with how much. i had to build up very gradually at first though.
my advice:
- start/ keep up the walking - its a great basic form of exercise and doesn't seem to trigger PEM unless you overdo it
- add in gradually some form of resistance training (strength training - so, weights, isometric etc - whatever works for you
- work out where your tolerance is - deliberately do too little to begin with and work up to find your limit - then back off a little.
- be systematic - keep records and have a target for each workout - make only v small increments each workout to avoid PEM reactions
- you will likely need longer recovery periods to begin with - so - esp if you have issues with PEM maybe only exercise 1x per 5-7 days. later aim to gradually bring this down to 2-3 days in-between - and eventually every other day-it will be slow at first - do not be discouraged - momentum will build
- focus on recovery as much as the actual exercise part - this is very important when you are ill - as your recovery processes are not working as well as they would normally - so you need to give it even more support - this includes:
- diet (your body needs good nutrition when fighting this thing and exercising) to recover well
- sleep - this when your body rebuilds itself best - the better you sleep, the better you will recover from exercise and the faster you will progress
i am following the above plan and am now able to work out 45mins every 3rd day and am getting stronger almost every workout (something that hasn't really happened consistently since my mid 20's) - despite also treating lyme with antimicrobials at the same time.
i'm not saying exercise will feel good - it will not to begin with - but stick at it - be systematic - increment slowly - and you will be surprised how much you can do.
good luck!!